Mystery undiagnosed spasms that are becoming a big burden — Scope | Disability forum

Mystery undiagnosed spasms that are becoming a big burden

Hey guys! I'm new to this but it would be amazing if anyone has anything similar or knows what root to go down on getting diagnosed and on medication that could help!! 

I have had a spasm condition for the past 10 years now, which radiates mainly in my hands and arms, where each finger and muscle in my hands moves at it's on accord and tenses my thumb and hand together tight to the palm. I get tense shoulders and the whole of my arms ache in pain from it. This also occurs in my eyelids, my lips and occasionally my thighs and feet.
Now I have so far not been able to find any cause for them starting and there's no obvious triggers, other than it gets worse if I am really anxious or after drinking alcohol too, although it's not all the time. 
I have been on antidepressants, muscle relaxants and epileptic medication, I went to therapy for anxiety which ruled out this is the reason for them. I've had bloods and they are only ever slightly low in iron, I have has neurological scans on my brain and there is non signs of it being to do with my brain causing it. I had a stay in hospital where they monitored my brain and nerve conduction and nothing was picked up from that either.
It has got to the point that doctors have given up on me and I haven't been able to find a medication or diagnosis to help out. It has got worse as I've got older and happens atleast 2 times a day and there's no possible way I can stop the triggers and spasms happening myself.

I know this is a far shot but if anyone has any ideas it would be greatly appreciated!!


  • Oxonlady
    Oxonlady Member Posts: 452 Pioneering
    Hi @Stokesoph96, sorry to hear of your problems.
    I sometimes get awful spasms in my legs and often they are caused by a condition called hypokalemia. When they test your kidney function as part of a blood test, if your Potassium level is below normal, this needs to be treated with Potassium tablets as it can cause spasms and other problems. I often need Potassium tablets. 

    I doubt if this is what you have but it's still worth asking your doctor if you could have an electrolyte imbalance.

    I hope you do find something to help you. All the best. 
  • janer1967
    janer1967 Member Posts: 13,272 Disability Gamechanger
    Hi and welcome to the community 

    I don't have any advice for you but just wanted to say hello 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,600 Disability Gamechanger
    Hi @Stokesoph96 - & welcome to the community. I'm sorry to read about your problems & lack of any diagnosis. I'm also sorry I have no ideas, & whilst understanding you're just hoping to meet someone who has gone through something similar, unfortunately we can't give any medical advice. I hope you do indeed find the cause of your spasms. :)
  • Stokesoph96
    Stokesoph96 Member Posts: 5 Listener
    @chiarieds Hi and thanks for messaging! I know it's not a place for medical advice, it's more just to see if there's anyone who has similar and see if there are other angles I could maybe look at it to mention to my doctor :smile:

  • Stokesoph96
    Stokesoph96 Member Posts: 5 Listener
    @Oxonlady Hi thank you for replying! I haven't looked into that before so I shall give it a read up and see what I can find! I don't remember having an electrolyte imbalance test but I do have poor kidney function from sepsis in the past so this could be definately looked into thank you :smiley:
  • Stokesoph96
    Stokesoph96 Member Posts: 5 Listener
  • woodbine
    woodbine Community Co-Production Group Posts: 6,048 Disability Gamechanger
    @Stokesoph96 hi and welcome from me as well, just a thought have you seen a neurologist?
    Be kind to newer members
  • Stokesoph96
    Stokesoph96 Member Posts: 5 Listener
    @woodbine Hi! Yes I have, I've seen 2 different neurologists over the time and neither are really sure what else to do. I've had mri/ct scans, nerve testing, week long EEG and that didn't show much either from the episodes caught. It's abit of a struggle to figure out who to see next haha


Need to talk?

Over Christmas the online community might be a little quieter than usual, so if you need urgent emotional support or if you feel like you might be in crisis, please read up about how to stay safe for now and find help.

You can also speak to somebody in confidence by calling Samaritans on 116 123 for free or send an email to
[email protected]

Of course, if you feel like you might be at risk right now, please call 999 or visit your local hospital.